personal genetics: what it might it means for me, my family and society
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Personal genetics: What it might it means for me, my family and society. Personal Genetics Education Project ( pgEd ) Harvard Medical School www.pged.org National Science Teacher Association 2013 San Antonio, Texas. One in a billion: Nic Volker - PowerPoint PPT PresentationTRANSCRIPT
Personal genetics:
What it might it means for me, my family and society
Personal Genetics Education Project (pgEd)Harvard Medical School
www.pged.orgNational Science Teacher Association 2013
San Antonio, Texas
http://thednaexchange.com/2011/12/29/genetics-and-the-year-in-review-my-top-10-stories-of-2011/
http://www.esquire.com/features/americans-2011/best-of-2011-medical-
breakthrough-1211-15#slide-15
One in a billion: Nic VolkerSequencing solved the mystery of his
devastating illness
http://www.post-gazette.com/stories/life/lifestyle/dna-tests-locate-genetic-branches-on-african-americans-family-trees-427734/
“DNA tests locate genetic branches of African American’s family trees”
Photo credit: Steve Mellon
The Havasupai Case and informed consent
Dana Waring, MA
Co-Founder and Director of Education
Personal Genetics Education Project (pgEd)
Harvard Medical School
www.pged.org
www.pged.org
pgEd’s goal:
To encourage thoughtful discussion about personal genetics
so people can make informed choices for themselves, their
families, and society.
Careers in science?
Jim Henson, The Muppets
Guiding questions in all our lessons:
Why does it matter to you?
How do we evaluate risk, and weigh the risks and benefits about DNA?
Do genes always predict what traits and conditions we are going to have?
personal genetics education project
• Knowledge about our DNA is becoming more detailed, inexpensive and widely accessible
• Insights about our health, behavior, family history and traits grow on a daily basis
• Highly personal information with social, legal and familial impact is available online and OTC
Why is genetics getting more personal?
personal genetics education project
“Under $1000 dollars in this decade” “Widely available in the next 5-10 years”
“ Transforming health care for the next generation”
• Average age to marry in the US, 2000-2003: Men 26.7, Women 25.1• Average age of first-time mothers in the US, 2003: 25.2
Sources: census.gov, cdc.org, NYT
Why is talking with students so urgent?
Big idea: Connecting genotype and phenotype
Genetics
You
personal genetics education project
Big idea: Connecting genotype and phenotype
Genetics Environment
You
personal genetics education project
personal genetics education projectPhoto: ReutersPhoto: Evan Hurd
Photo: Reuters
Direct to consumer ( DTC) analysis for sale on the internet
Sample traits from Direct-to-consumer genetic testing company 23andme
What information would
you like to have about
your risks for various diseases?
Might your opinion change at different points in your life?
personal genetics education project
Why personal genome analysis?
• Curiosity about ancestry, family history
• Ideas for medical tests and interventions if I learn I’m at risk
• To find the right drugs, in the right doses, for my conditions
• Motivation to my change habits
• Planning for my long term medical and financial needs
• To inform my reproductive decisions
personal genetics education project
Personal genomes: what are the challenges?
1. How far ahead is the technology of its clinical usefulness?
2. How much information would you want to know? 3. Will fair weight be given to environmental & social factors?
4. How will your genetic information affect your family?
5. How much should we be concerned about discrimination at work and by insurance companies? 6. How can we ensure access for all?
personal genetics education project
“ The first civil rights legislation of the 21st century”-Senator Ted Kennedy
Genetic Information Non-discrimination Act (GINA)
personal genetics education project
Title 1: Prohibits discrimination in group and individual health insurance plans. Forbids genetic information being used to deny coverage, adjust premiums, or require someone to take a genetic test.
Title 2: Prohibits employers from using genetic information to make hiring, firing or promotion decisions. Severely limits employers rights to request, require, or purchase an employee’s genetic information.
GINA: Prohibits discrimination in health insurance and employment
What are some of the big social issues in personal genetics?
• Athletics and genetic testing – how much can DNA reveal about ourselves and our potential?
• DNA and the law - Can we use DNA to keep us safe and preserve civil liberties at the same time?
• How do we decide to use a new reproductive technology?
pgEd lesson plans: All Common Core aligned, tackle these issues, active classroom, all free!
WANT TO PILOT A LESSON?
What might a “sports gene test” tell us?
personal genetics education project
www.nytimes.com/2008/11/30/sports/30genetics.html
What leads to excellence in sports:Genes? Environment? Training? Drive?
Image via www.womanzworld.comImage via nhl.com
Image via NYT/Chang W. Lee
Image via indiadaily.com
personal genetics education project
Connections between genetics and athletics?
• There are genes involved with collagen production that are thought to be useful in predicting certain types of soft tissue injuries.
• A small study indicates a possible link between having the ApoE4 variant and increased risk of severe effects from a concussion.
• What is the predictive power of these variants? (genetics vs. environment)
ApoE4 and concussions: A new area of inquiry
• ApoE4 variant is also associated with Alzheimer’s disease (AD).
• People with one copy of the variant, ApoE4, have 3x higher risk for AD.
• People with two copies of the ApoE4 variant have 15X higher risk for AD.
personal genetics education project
ApoE4 and concussion risks?
• How does one weigh the benefits and risks of knowing about one’s genetic status related to AD?
• Would you want to test your child to help decide which sports to possibly avoid or to pursue? How much does the genetic component matter?
• Is this a family decision? Why or why not?
personal genetics education project
personal genetics education project
DNA and society: New ways to use DNA to solve crimes
http://www.scientificamerican.com/article.cfm?id=portrait-in-dna
Scie
ntific
Am
eric
an 2
011
personal genetics education project
DNA as identification tool: beyond individual crimes
personal genetics education project
• The Innocence Project: Exonerated 274 people, 17 of these exonerations were death row inmates
• 70% of exonerations have been people from minority groups
DNA collections used to prove innocence
www.innocenceproject.org
personal genetics education project
“A Not So Perfect Match” The Darryl Hunt case on 60 Minutes
Journal Photo by David Sandler)
personal genetics education project
PGD being performed on a 3-day old embryo
Image via http://www.obgyn.net/Frontiers_In_Reproductive_Medicine/images/PGD.gif
personal genetics education project
What is preimplantation genetic diagnosis (PGD)?
• PGD is a method to test for certain genetic traits in an embryo, almost always for genetic disease.
• An embryo is created via in vitro fertilization.
• Genetic testing occurs when embryo is 2-4 days old, typically at the 8-cell stage.
• A single cell is removed and tested.
• The results of testing are used to decide which embryos, if any, to implant in prospective mother’s uterus.
Molly and Adam Nash
Fanconi anemia (disorder of DNA repair)
Cure: PGD, umbilical cord bloodstem cells
http://tvnoviny.sk/sekcia/spravy/zahranicne/vo-francuzsku-sa-narodilo-prve-dizajnerske-dieta.html
Hudson 2006 Fertility & Sterility
Public attitudes regarding PGD
Fatal Transplants Adultillness
Gender Strength &Intelligence
MenWomen
Wants a total ban on PGD
Supports government regulation of safety and quality
Thinks government should regulate ethicsonly
Supports no government regulation
Believes government should regulate safety, quality and ethics
Opinion poll: What role, if any, should the US government play in regulating preimplantation
genetic diagnosis (PGD)?
personal genetics education project
Discussion Questions• What are the potential opportunities and challenges of PGD?
• Now that we’ve discussed the issue a bit, did you change your opinion about whether you’d want to choose certain traits for your child?
• If your parents used this on you - should they tell you? Or is it no big deal?
• Do we need rules to guide how this is used? If yes, what sort of rules? Whose job would it be to enforce them?
www.Map-Ed.org
5 questions, no genetics expertise needed. Map pictured is 14 days post Map-Ed launch